Staying Mentally Grounded in Social Isolation

Part 1-My own experience with isolation, and how to stay sane:

When the government in my state announced the mandate that we should practice social isolation, my life didn’t really change much. I am fortunate enough to work for a company that values us as people, and has made working from home not only do-able, but enjoyable. This is, to date, the easiest social isolation I’ve done. And yes, I’ve done it before, more than once.

One thing that makes this different, and carries its own difficulty, is the uncertainty surrounding the situation as far as what the world will be like when it’s over. In the past, I knew the world would be the same when I re-entered it. Now? There isn’t so much certainty. If you’re struggling with that uncertainty, or the loss of normal daily life, it’s okay to grieve. I did every time and it was vital to my health.

The first time I was isolated was brief, and due to swine flu when that was the virus we were all worrying about. I was at home for two weeks, and the Stephen King mini-series marathons on TV were absolutely the only reason I didn’t sleep the entire time. I didn’t learn much this time, mostly because I was unconscious and resting for most of it. The thing I wish I’d done differently was text my friends more. I could’ve used the support and the social interaction.

The second time I was socially isolated, it was due to an extreme, but acute, bout of depression caused by the situation I was in during the fall of 2012. I will most likely write more about that in my next post, but for now: I lived alone, in a big city, with zero friends there or in my hometown, and I was expected to function completely alone.

First, I was fortunate to have all the creature comforts I could want and supportive parents. I had school to distract me, though I essentially stopped attending classes and disappeared from the world for an entire semester. I left my home once or twice a week to eat, and then enjoyed, to the best of my depressed abilities, Netflix, video games, phone apps, and an unholy amount of sleep the rest of the time.

This? Not healthy. That is NOT the way to go through social isolation and I really urge everyone to remain social and productive in some way. I nearly died, and I say that to press the point that it is not good for you. I wasn’t being forced into isolation, but I was isolated, and I handled that isolation in the worst way. It also seems to be the biggest temptation if you’ve lost your job or social connections during this time. No matter how alluring sitting on the couch watching TV seems, it’s not going to do you many favors.

The one good thing I did for myself then, which I do recommend, was that I took a lot of late night walks on the beautiful campus nearby. The fresh air, scenery, and exercise are probably some of the biggest reasons I wasn’t more sick (I left there with physical illness from ignoring my physical needs). It provided a needed respite from my self-imposed prison and restored my sense of peace and calm. If you can’t go for a walk, try to find images of nature or even a virtual tour of a park or facility you enjoy. You could even imagine your favorite outdoor place.

There was a little less “outdoor” for me during my third isolation but, it was also much less lonely, and healthier. My 2015 illness, which is explained in one of my much earlier posts, put me in bed. The summer heat kept me inside even after I was able to walk around.

I spent 7 months isolated with my family because I simply didn’t have the energy to entertain guests or have even a small conversation, for that matter. Believe it or not, I stayed mentally healthy the entire time. I was being physically tortured by my own body every minute of every day, and I was isolated with my parents, and I still managed to stay happy. Not everyone is so lucky and this was absolutely not completely due to my own actions. I am grateful for the people who helped me. None of us can do this isolation without some kind of support, even if it’s long distance.

How did I help myself when others couldn’t? I breathed. I was in a constant state of focusing on my breathing; a breath in for a four count, hold, and the slowest breath out for as long as I could manage it.  It’s a meditation technique but it’s also a calming technique medical professionals recommend for anxiety and to reduce all kinds of physical illnesses like hypertension. My entire day was me focusing like this, to stop the constant pain and nausea and to keep me sane. On its most basic level it satisfies the primal need for air and tells your anxious/stressed body “I am still breathing, I am still alive”.

If you’re feeling overwhelmed, this is a good way to get back to basics. If you are healthy and able, focusing on breath can be a wonderful way to ground yourself. Don’t stress about the “how”, just breathe in whatever way helps you. Try reading 10% Happier by Dan Harris for some excellent tips on different types of mediation and a great read in general.

What if you’re sick, and breathing is difficult? Or your panic attack is too overwhelming to breathe? I had days like that too, when my heart condition was bad and it felt like all the air was being pressed out of me. In those times, I would focus on a part of my body that didn’t hurt and think about what it felt like. It’s a mindfulness technique that takes your focus away from the negative stimuli and brings it to something benign and lacking any unusual stimulus. The bottom of my foot was my part of choice.

Part 2-Replacing anxiety with activities:

Aside from practicing mindfulness meditation, I picked up a lot of hobbies. Previously I had really only played video games, read, or watched movies. Now I was hungry for absolutely any activity to distract me. It worked.

Here are the things I did to entertain myself: I learned everything I could. I focused on self-improvement instead of entertainment and actually found I was more entertained that way.

YouTube is amazing. I learned to Knit, to sew more complex things, to embroider, and to solve a rubix cube the slow way. I practiced piano. I stretched and went for walks with my parents when it was safe for me. I read non-fiction books and fiction books. I played puzzle games. I did puzzles, almost constantly; we had a puzzle on the table daily.

I practiced drawing. I colored in adult coloring books. I took long baths with bath bombs and calming music. I learned anatomy (and then forgot most of it). I went on www.memrise.com (which does have more than just language lessons) and www.khanacademy.org and learned everything I could. I practiced mental math until it wasn’t difficult or scary anymore. 

I took in anything and everything. My mindset was “If I’m going to die, then I’ll die knowing I did a lot of things. If I’m not, then I’ll live with more skills/knowledge and maybe I can help someone else.” The fact that I wasn’t bored out of my mind helped too.

There is always something to do. Enjoy the view from your room. Learn something new. Count everything you see that is a particular color. Make something to donate or share like a fleece tie blanket or a heartwarming painting. Take time to appreciate your loved ones. Practice not caring what others think and being yourself, because we all need a refresher on that sometimes. Confront your fears. Share your fears with someone else. Give your pet attention. Give yourself attention.

Part 3- Gratitude

This has been the easiest isolation for me because I still get to talk to my coworkers. I still feel like I am offering something to the world (which isn’t a requirement, but it’s something I enjoy doing). I can eat, and exercise, and get out of bed. I can use my phone and have the energy to talk to loved ones.

I am fortunate. I know this. Some are not as much so. But if you’re reading this, and you find that you’re scared, or bored, or wishing you could get more social distance between you and the people you live with, maybe this will help.

Life is not always what we expect. Sometimes we have to do it differently, or alone, but we adapt and survive anyway. Every time I was isolated was different. The time that was the healthiest was when I focused on self improvement and my breath. My gratitude, and my entertainment followed naturally.

There is value to anything and everything, even if our culture tells us otherwise. Even if what you need to do is sleep, you’re resting your mind and body and that’s important. If you need to cry and grieve for the life we were living before, that helps to refresh your body and relieves the stress and pain. Everyone worries, that’s normal. Just remember to try to let go of the things you cannot change and focus on what you can. Even if the only thing you can change is the pace of your own breath.


My Parasthesia, Brevity of Life, and a Fellow Spoonie

I mentioned this in my last YouTube video, but I haven’t gone in depth about how it affects me mentally, or how some of my daily life is different. I have paresthesia, or numbness, in my hands and occasionally my toes. Most notably in my right hand.

Now, when I tell people this, I get varied responses. Most are the kind that are dismissive, or sympathetic but also not touching too heavily on the implications. But two responses I’ve gotten were empathetic, and/or supportive, and the one that was both came from a fellow spoonie.

First, I want to talk about how I feel. I’m not throwing a pity party, but it’s also normal to go through that sometimes. So, if you’re someone who’s in that place right now with your own illness, that’s okay. It’s normal to have moments that feel hopeless. Congratulations, you’ve embraced your humanity. But that isn’t me right now, and it hasn’t been much this whole time because we still don’t quite know at what level of seriousness this all is anyway.

I’m not feeling sorry for myself. Most of all, I’m not scared. Not in the way people think anyway. I’m not scared of having my hands go totally numb to the point where I don’t know they’re there unless I look. I’m not afraid of the worst case diagnosis (one possibility of which is neurodegenerative). I’m not afraid of having to alter my lifestyle; considering I have already done that with my other illnesses.

What I do fear is running out of time to do the things I love. Many of which require good hand coordination and dexterity. Piano , guitar, painting, drawing, cooking, sewing. It’s been difficult trying to do those things lately.

My handwriting, which has suffered greatly, is not the way that I would prefer. I used to pride myself in my beautiful handwriting, and now my hand cannot continue writing well for a long amount of time. My boyfriend has started checking the temperature of my kitchen sink water before I wash dishes, because I’m unable to feel how hot it is. He went to wash his hands and realized I was burning my own under the water.

Sewing the most basic things is painful. I haven’t been able to get to a piano to play and luckily guitar isn’t affected much, but will they be affected in the future? Drawing is almost impossible when my numbness is at its worst. Life is so short, but that brevity becomes more drastic when my skills are declining.

I’m eager to find out what’s wrong, so that I can move forward, get the accommodation I need, and start making a plan. I’m much more uncomfortable with the uncertainty, than I am with the diagnosis I might get. If it’s just a pinched nerve, then I’ll do the treatment and try to heal the best I can. If it’s a more chronic condition, then I’ll make a plan, and move forward.

I was more scared of losing my favorite hobbies up until recently, when I met a fellow spoonie who has peripheral neuropathy. He cannot feel his legs, and must look down at them to walk. He’s had to relearn to walk multiple times. That’s his reality. He was empathetic to the whole experience, but not patronizing or dismissive. He didn’t tell me to stop worrying, because he understood that worrying isn’t really what I’m experiencing. He knew I was only mentally preparing for all possibilities. He said it straight: there might come a day when you want to quit because you can’t seem to do anything. That I might lose more of my feeling in more limbs. That if that worst case scenario happens, I simply want to be prepared. He doesn’t quit, he knows the struggle, and he moves forward. So, his advice was this: If you look at your hands, it’s easier. Your brain will adjust to the idea that the signals it’s getting are different. Just work, go through the long process, and don’t panic if you can help it. He and I agreed that breathing and remembering that if we just remain grateful for what we can do, we can keep learning, growing, and most importantly: living.

This advice made my day, not because I didn’t already know, but because it was coming from someone who had lived it. When a doctor or PT tells you these things, it’s hard to believe that it’ll be that easy. But when someone who knows what it’s like does, it reminds you that sometimes you just have to change your perspective. So, if I have to get special art supplies, or draw more slowly, or use a different art medium, or hand sew less and machine sew more, I can. Loom knitting is already my favorite over traditional needle knitting. Making clothing can be less detailed and more basic and I can work my way up to detail.

And if, eventually, I cannot do those things at all anymore, I will find another hobby to enjoy. And if eventually I can go back to PT, or there’s another treatment and I don’t have to deal with this again, then even better. I can go forward with an even greater appreciation for how my body functions. No matter what, I’m not going to fear what happens. I will fear becoming complacent. I will never stop trying and moving forward even if every movement is painful. I will use my spoons to the fullest and keep growing and learning. And when all else fails, I will ask my loved ones for help when I need it.

Time, Energy, and Changing Plans

Sometimes I forget that I have chronic illnesses. I’m incredibly lucky to be able to say that, but it can become a problem.

When I’ve put in the work, and planning, and gotten a good day (or few days if I’m lucky) with no health problems…. eating what I want without enzymes, doing what I want and not feeling tired, no dizziness or extreme fatigue, no stomach pains, no muscle or joint pain, no episodes of extreme hypersensitivity…. I forget. Being sick is my normal, so when it doesn’t happen my brain gets excited and forgets so that I can plan all of the wonderful things I want to do.

So I call/text friends and family and make plans. I offer to work extra days at my job; which is a highly physical job and fast paced so it takes a lot out of me while also keeping me healthy. I basically over-book myself. That’s what happened this past week.

Getting my YouTube channel started, making plans with friends, cleaning the apartment completely, all while it was a difficult week at work because the steam in the building was shut down and I work running a giant industrial washer sanitizing supplies like carts etc… proved to be too much.

The steam shut down took all of my extra spoons because I was working in freezing conditions and constantly covered in water or at least had soaked socks and shoes. Along with that, I misjudged the time needed to do some things and lost sleep.

Postponing and then, for another reason, having to reschedule plans with a friend was one consequence. I got lucky and another friend postponed plans which gave me time to rest. Even so, by the time I got to Saturday, a day to visit museums in Cleveland with my dad, I was feeling the week. It was a great day, I saw a lot, but not as much as I wanted. I had to head home early because my body was just done.

Luckily I have an understanding father who didn’t mind making plans to come back another time.

Something a lot of people respond to Spoonies postponing, canceling, or cutting short plans with is anger, or disappointment, or even questioning whether we really want to be there. It’s frustrating and can really make a person want to never make plans with anyone again just to avoid it.

The solution I’ve come up with is to just not give a damn. If I have to do something for my health, and I’ve been honest and upfront with my friend, family member, or boss about my inability to be there, then I have done what I can. There’s no sense in beating myself up when I’ve done nothing wrong.

As Spoonies it’s our job to advocate for ourselves because many times no one else will. It’s difficult, of course, because advocating takes energy. Sometimes the spoons to explain in detail that you don’t dislike a person, you’re just genuinely exhausted, just aren’t there. But here’s the cool thing: it’s a great way to find out who’s worth having in your life and who isn’t.

If someone doesn’t understand your needs, or isn’t compassionate towards you, then maybe they’re not someone who needs to be in your life. If you can’t cut them out for whatever reason then remember that you haven’t done anything wrong. Don’t apologize for doing what you need to be healthy. Apologize for any inconvenience, apologize for changing their plans or schedule, but don’t apologize or feel bad for making healthy choices.

We cannot expect, in a world full of people with no health problems, especially in a country that has a culture of “fix the symptom, take pills, postpone the bad feelings” instead of promoting true overall heath with lifestyle changes, that everyone is going to understand that you’re not jerking them around. That you genuinely need time off to sleep, even if it feels like all you do is sleep or sit.

No one can tell you what you need. You’re the only one living in your body and the only one who’s stuck with it for your whole life. You’re the only one who gets to make decisions about it.

Side note: If you are in a situation where you feel like someone has taken away your choices about your own body, please seek help. Hospitals are equipped with staff who are trained to handle that kind of thing. When they ask if you feel safe in the home or even if they don’t ask, in America it is a patient’s right to request a private meeting, without a family member present and that is a good time to say something. Police also can help and have access to other longterm resources.

Love, Gratefulness, and Small Moments

Every so often I re-realize something I already knew, with a deeper amount of understanding. Recently it was: No matter how difficult things get, there will always be small moments. There’s a meditation style (if I could remember the name of it or the originator I’d tell you) which allows a person awareness of their surroundings in an observant way. One of the best things to “observe” when dealing with chronic illness/pain is that it’s constantly changing. Nausea and pain never stay at the exact same level forever. They ebb and flow, feeling more intense then less intense. It was easy to focus on the lessening of my pain and that it would be gone soon; instead of focusing on how intense my pain or nausea was, I focused on the changes in between.

This was the form of meditation I used when I was first sick and therefore nauseous and in pain 24/7. I’m pretty hypersensitive, so I was never able to block out my surroundings. So, instead, I would focus on them over my own body. I would feel how sitting felt, the floor, the air, any sounds or smells, all of these things got noticed at once. The catch is to not have any judgements about the stimuli felt. If the air feels hot, that’s okay, but if you think about how much you wish it could cool off, that’s not (except everything is okay because it’s meditation, not bootcamp). It’s always helped me so much because it allowed me to stay in the moment without focusing on something that could be affected by my condition, such as my breathing. No more trying to meditate and getting stopped by lack of deep breathing or feeling like there was a rock jammed in my diaphragm.

The biggest way this helped, was it also taught me and helped me to appreciate small moments: the beautiful way hot tea steams, the way my mom’s fluffy dog snuggles up to me almost constantly when I visit, the warmth of a favorite hat, the company of a friend, or the beauty of a row of twinkle lights. Those moments are peaceful for me and give me an opportunity to be grateful for what I have, and to stay in the moment and enjoy it.

I’ve had a hard time in my personal life lately. What it’s made me even more sure of is how important it is for me to be grateful and content with what’s going on now. I’m trying to do that more and more. Are there things I want in my life? Yes, of course! But I’ve learned that if I focus too hard on the things I want, I miss out on the things I’m lucky to have. I know this is what everyone means when they say “count your blessings,” but as I stared at the beautiful twinkle lights in my living room, it was so calming, even when I was having one of the most stressful weeks in a while, that I couldn’t help but remember how lucky I am.

Valentine’s Day is coming up this week. I know it can be a difficult day for some people, especially if your illness interferes with not just plans, but in finding someone to even think of being a valentine. I know it’s going to be a lonely day for me as well but that’s okay. I’m going to challenge myself to be grateful AND show love. You do not have to be seeing someone romantically to show your gratitude for them and Wednesday will be the perfect chance.

If you don’t like to do this, or if time is limited (which is my case), it’s also a good time to treat yourself to some pampering and remember that you deal with a lot. Everyone has problems whether it’s chronic illness or not, and everyone likes to know they’ve worked hard and that someone cares. Show yourself that gratitude and caring!

My tradition has always been to buy myself a box of chocolates, take a hot bath, and just relax and watch Netflix and thank myself for getting through all of the challenges of the past year. I’ve also occasionally gotten a friend something when they’ve acted as a big support for me. For others, it might just be letting themselves think of all the ways they’ve stayed strong in tough times, or making themselves a cup of tea, or going out with family to a place that they enjoy, or even just sitting with someone they care about and enjoying that person’s company in the moment.

The phrase “self-care” gets tossed around a lot in the Spoonies world and all over the internet in general. I personally think sometimes it goes to far, because well intentioned people could take it as “ignore someone else’s needs for your own”. In my opinion (and it could just be me personally), true self care is the act of showing yourself gratitude, of lowering your stress levels, but of also helping others and being grateful to them. Humbling experiences, the kind when I ignore something I want or possibly need (which can wait… I try not to ignore important needs) to help someone else. That’s something that makes me feel calmer, useful, and in a position to look at my life and be grateful.

Whatever you’re doing this week, on Valentines day or any other day, it might help to think about what you have instead of what you don’t. I know it’s helped me a lot in times when my wants were creating more sadness than motivation. Whether you’re a Spoonie or not, I hope your week is filled with less pain and discomfort and more time enjoying what you love.